Ren et al. BMC and (2021) 21:595 https://doi.org/10.1186/s12884-021-04057-0

RESEARCH ARTICLE Open Access Pregnancy and parenting experiences of women with -to-twin transfusion syndrome: a qualitative study Lijie Ren1,2, Cancan Song2, Chunling Xia2, Nan Wang2, Yan Yang2*† and Shaowei Yin1*†

Abstract Background: Qualitative research can reflect the actual thoughts and experience of research subjects and can be used to explore the experiences of women presenting with twin-to-twin transfusion syndrome (TTTS) to facilitate the provision of targeted psychological support. Methods: A semi-structured interview method was used to assess the pregnancy and parenting experiences of women with TTTS. Colaizzi method was used for data analysis. Results: Eighteen women participated in the study. We found that women with TTTS during pregnancy experienced persistent worry about their children’s health from the disease diagnosis to the subsequent parenting processes, even in case of minor changes in their children’s health. The lack of an efficient referral process and health information increased their uncertainty about their children’s health. Conclusion: In addition to the children’s health, other difficulties encountered during pregnancy and parenting may aggravate the pressure. Clinicians in the first-visit hospital and foetal medicine centre should improve the referral process and establish a follow-up system to provide women with health information and psychological support. Keywords: Twin-to-twin transfusion syndrome, Pregnancy and parenting experience, Mental state, Qualitative research

Background foetuses was about 70%. The incidence of short-term Twin-to-twin transfusion syndrome (TTTS) is a serious and long-term neurological complications in surviving complication of monochorionic diamniotic (MCDA) children was about 3–15% [3–5]. Based on the charac- pregnancy. Without timely treatment, the perinatal mor- teristics of the disease and current treatment status, tality rate can reach 80–100% [1, 2]. The fetal survival women with TTTS may experience serious adverse rate reported after fetoscopic surgery was about 80–90% events such as loss of the foetus, extremely premature for at least one twin, and the survival rate of both delivery and poor foetal prognosis. Previous studies have indicated that women with TTTS may experience anx- iety, depression, post-traumatic stress, and higher par- * Correspondence: [email protected]; [email protected] †Shaowei Yin and Yan Yang contributed equally to this work. enting pressure, thereby necessitating urgent clinical 1Gynecology and Obstetrics Department, Shengjing Hospital of China attention for their mental state [6–9]. However, based Medical University, 36 Sanhao Road, Heping District, Shenyang City CO on current research, the lived experiences and actual 110004, Liaoning Province, China 2Nursing Department, Shengjing Hospital of China Medical University, 36 thoughts during pregnancy and postpartum cannot be Sanhao Road, Heping District, Shenyang City CO 110004, Liaoning Province, definitively determined, which precludes adequate China

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provision of targeted treatments. In this regard, qualita- consent form and obtained their electronic signature. tive research is a method used to describe the life experi- Data collection and analysis were carried out simultan- ences of research subjects, capturing their emotions, eously. When the data reached saturation, we stopped beliefs, and behaviors. Under a framework of patient- contacting eligible research subjects. And we informed centred treatment and care, qualitative research has re- them that we might quote our conversations in research ceived extensive attention from clinical professionals results, but we concealed the information that could [10–12]. Otherwise, in China, although the regional fetal identify them. In research results, all quotations we used therapy centers have begun to establish referral networks obtained participants’ agreement. Heterogeneity was radiated by their capabilities, it is far from forming an ef- noted among participants, including difference in treat- fective mode of rapid communication and direct referral ment decisions and outcomes, methods of conception, between primary hospitals and fetal therapy centers. A and pregnancy history [14]. The exclusion criteria of this large number of patients are transferred to higher hospi- study included: one twin with malformation; Monochor- tals through ordinary referral channels by primary hospi- ionic monoamniotic ; twin anemia-polycythemia tals, but these higher hospitals are often not fetal sequence (TAPS); Selective fetal growth restriction therapy centers and cannot complete fetal therapy. In (sFGR); patients with severe pregnancy complications; addition, some patients were only told that they needed acute intrapartum TTTS; the patients not suitable for to visit the fetal treatment center, but they were not fetal therapy. urged to visit the fetal therapy center in time, and they did not get enough information about fetal therapy and Data collection fetal therapy center from the primary hospitals. The A semi-structured interview method was used for data above problems may cause a delay in the patient’s treat- collection. Participants close to the foetal medicine ment. Our study utilized a semi-structured interview centre attended face-to-face interviews. Participants method to explore the experiences of pregnancy and from other cities were interviewed by telephone. All in- parenting as well as the main difficulties encountered by terviews were recorded with the consent of the partici- women with TTTS, to develop possible solutions for im- pants. To ensure the objectivity and truthfulness of the proving the mental state of these women in the prenatal data, interviews were conducted by trained researchers and postpartum periods. [15, 16]. The interviews were conducted according to the following three themes: their experience following a Methods diagnosis of TTTS, parenting experience after childbirth, Participants, ethics, and eligibility and main problems encountered and help required from This study was conducted in a foetal medicine centre of the time of diagnosis to the parenting period. The spe- China, which is a tertiary referral centre for tens of mil- cific questions are presented in Supplementary file 1(Eng- lions of people and provides a number of fetal treatment lish language version and the Chinese language version). services, including fetoscopy laser therapy for TTTS. And we stopped contacting qualified groups when no The hospital database was searched for patients diag- new themes appear during data analysis. nosed with TTTS from January 2018 to December 2019. The diagnosis of TTTS was according to the Quintero Data analysis diagnostic criteria [13]: the maximum pool depth of am- We transcribed the recorded data within 24 h and noted niotic fluid of the recipient foetus was more than 8 cm the emotional state of the interviewee, including laughing, (≥ 10 cm after 20 weeks), and the maximum pool depth crying, pauses, and silence. After the transcription, an- of of the donor foetus was less than 2 cm. other researcher assessed the recordings and text. Colaizzi All cases were in their second trimester at the time of method was used for data analysis [11]: two researchers diagnosis of TTTS. Ethical approval was obtained from read the text data repeatedly, extracted and coded state- the ethics committee of Shengjing Hospital of China ments related to the research purpose, and handled the Medical University on 18 January 2018. The study was different codes. Then the meaning of coding was summa- conducted according to the principles of the Declaration rized. The theme was refined, and the formation process of Helsinki. We contacted patients by telephone, ex- of the theme was described in detail for the third re- plained the purpose of the study in detail, and invited searcher to verify. The results were then returned to the them to participate in the study. In order to show re- interviewee to verify the authenticity of the content [16]. spect and care to the participant, the interview time is determined by the participant. All the women participat- Results ing in this research received an informed consent form Demographics in electronic version, we started the interview after en- During the study period, a total of 62 women were diag- suring that they understood the content of the informed nosed with TTTS in our hospital, and 18 of them Ren et al. BMC Pregnancy and Childbirth (2021) 21:595 Page 3 of 8

participated in the study with the age range from 24 to periods, (2) the main barriers encountered from diagno- 39. Of the 18 participants, six attended face-to-face in- sis to parenting, (3) required support. terviews, and 12 underwent telephone interviews. Fifteen received fetoscopy treatment, and three declined treat- The experiences and emotion in different periods ments. The average age of the interviewee’s newborn Diagnosis experience was 14 months. Interviewees’ pregnancy history and MCDA pregnancy is a high-risk pregnancy that receives pregnancy outcomes are shown in Table 1. more attention from clinicians than a normal single pregnancy. Although patients might be informed of po- Themes tential risks of twin , the joy of having twins After coding and analyzing the text data, three themes was the primary mood of early pregnancy. The shock, emerged: (1) the experiences and emotions in different sadness, and extreme worry about foetal health

Table 1 Pregnancy history and basic information of interviewees Interviewees Education Marital Conception Quintero Diagnosis Gestational Number Number of Whether Interview status method of weeks of of adverse referralb time to gestational delivery Surviving previous delivery or weeks children pregnancy outcome a A1 Undergraduate married Assisted III 19 + 4 32 2 1 No 11 months reproduction A2 Undergraduate married Natural III 24 31 2 0 No 12 months conception A3 Diploma married Natural III 21 + 3 33 2 2 Yes 8 months conception A4 Undergraduate married Natural II 17 + 3 36 2 0 No 16 months conception A5 Undergraduate married Natural III 20 + 4 36 1 0 No 18 months conception A6 Undergraduate married Natural III 21 + 6 31 2 0 Yes 12 months conception A7 GCSEc married Natural II 22 + 1 36 1 1 Yes 13 months conception A8 Diploma married Natural III 20 + 4 34 2 1 Yes 12 months conception A9 Diploma married Assisted III 22 + 4 33 1 2 Yes 8 months reproduction A10 Diploma married Assisted II 23 + 1 26 0 3 Yes 8 months reproduction A11 Undergraduate married Natural III 24 36 2 0 No 9 months conception A12 Undergraduate married Natural III 23 + 1 27 0 1 Yes 10 months conception A13 Diploma married Natural III 21 + 3 37 1 0 No 19 months conception A14 Undergraduate married Natural III 18 + 2 34 1 1 No 20 months conception A15 Diploma married Assisted IV 24 + 4 33 2 2 Yes 23 months reproduction A16 Undergraduate married Natural III 20 + 2 0(Refuse 0 Yes 20 months conception surgery) A17 Undergraduate married Natural III 21 + 6 0(Refuse 0 Yes 19 months conception surgery) A18 GCSEc married Natural II 20 + 4 0(Refuse 1 No 12 months conception surgery) a number of adverse previous pregnancy outcome refers to the number of , , fetal or child deaths of the patient b Referral depends on whether the disease requires fetal therapy and whether the first hospital can provide fetal therapy c GCSE General Certificate of Secondary Education Ren et al. BMC Pregnancy and Childbirth (2021) 21:595 Page 4 of 8

experienced by patients at the time of TTTS diagnosis did not work, I had to endure the pressure by showed a considerable contrast with the joy experienced myself”. in the previous period. “The early measurements of foe- tuses were very normal. When the doctor told me about The survival rate of both twins after fetoscopy is about TTTS, I was shocked and wondered how could this hap- 60%, so some women may face the risk of losing one pen to me? It was the first time I heard about this dis- foetus or both foetuses. The successful experience of ease, and I thought it was very serious, I was very scared previous fetoscopy surgery gave patients hope to give and worried that both foetuses would dead”. birth to two healthy children, while the sudden loss of a caused a huge psychological gap for patients, lead- Treatment decision experience ing women to worry more about the surviving fetus. For As fetoscopy is currently the preferred treatment women who eventually lost two , the heavy blow method for TTTS, the choice of treatment method did meant that their previous efforts were futile. “I was very not bother the patients. The main issue they faced was happy that the two foetal conditions had improved at the whether to accept surgery, while family support was a time of the first postoperative ultrasound monitoring, but critical factor in their decision. For women who opted in the next monitoring, the doctor told me that the small for surgery, their primary concern was to save the foe- foetus had died. I really couldn’t accept it at that time, tuses. These patients believed that it was fortunate for and my mood suddenly went from heaven to hell. Al- them to have the opportunity for treatment. “We knew though I had always known that the small foetus health the risks and prognosis of the operation, but no matter was not good, I still did not want to lose it, and since what the outcome was, we must have the operation. As then I had been worried about whether the surviving long as there was a glimmer of hope, we must give the fetus would have problems”. child a chance; then, we would have no regrets”. For women who declined treatment, the decision-making “I was so proud of this gestation. But it was really a process was extremely painful. After considering the po- pity that the two twins all died. All my effort for the tential risks, they declined surgery. Such patients typic- foetuses was in vain. I did not know how to face it. I ally had good fertility or already had offspring, and didn’t want to do and think anything at that time”. patients’ family members disagreed with their decision to have surgery, especially their husbands. “During preg- Mother-infant separation experience nancy, I accompanied fetal growth and I was very reluc- Psychological stress during pregnancy ended with the tant to give up my children. But I had no other choice successful birth of the foetuses. However, the and I could not decide on this matter alone. My family hospitalization of the newborn led to another type of did not support me for treatment, they said that I must pressure on the women. During this period, they were be responsible for my other children, and I could get worried about their children’s health and experienced pregnant again easily. We all could not accept unhealthy self-blame for not taking care of their children them- children”. selves. “It was all my fault. The children had suffered so much since birth, I didn’t fulfil my responsibility as a Postoperative pregnancy experience mother”. “I nearly went crazy , I could not sleep, I could Monitoring was required after treatment frequently, at not do any other things, and my heart was fully occupied the same time, the patients had to bear the pressure of by my children. I wanted to know everything about my potential risks such as premature delivery, intrauterine children. I had been holing the phone and waiting for the death, and foetal short-term and long-term complica- hospital to contact me, but I was worried about receiving tions. Further, they faced the sudden changes in foetal bad news about my children. If the children had some health. Fourteen women out of 18 stated that their un- complications, I might not survive. “. certainty and worry about foetal health lasted from diag- nosis to delivery. Before the foetuses were born, the Heavy parenting pressure pressure induced by foetal health had to be borne almost Accompanying the children throughout their growth entirely by themselves. was a positive experience overall, but women experien- cing TTTS also faced greater parenting pressure. The “Surgery did not relax me too much. I was afraid pressure mainly comes from several aspects, including that the foetuses were born too early and had seque- the costs of fetal therapy for TTTS, which are at pa- lae. I always felt uneasy at home, because I could tient’s expense in most parts of China; The costs other not see or touch them, and I did not know their than reimbursement of neonatal medical insurance; the state. I did not dare to move around after returning worries for possible neonatal hospitalization and the home”. “My family always comforted me, but I felt it more serious concerns children’s health problems in the Ren et al. 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parenting process. Due to the occurrence of TTTS in However, there is currently no referral process specific- the gestation, regardless of whether the children had ally for women with TTTS. Most first-visit doctors only been hospitalized after birth, these mothers said that informed them of the name of the foetal medicine they could not take care of them like healthy children. centre, and patients were required to search for informa- Because they were highly vigilant about their children’s tion about the foetal medicine centre and the referral health and were sensitized to any small abnormalities. process on their own. A substantial period of time may They would pay special attention to the children’s devel- have been wasted in this process. Most patients thought opment at each time point. If the children did not reach that the process from the first-visit hospital to the foetal growth standard at a specific time, they would become medicine centre was the most convoluted. They worried anxious and look for ways to promote the child’s growth. that the foetuses would suddenly die on the way to the “When the children were just discharged, I was worried centre or due to a lack of timely treatment. “After discov- that they would suddenly stop breathing. Looking after ering the abnormality, we drove over at night. The stress them was like a job. I had to make sure that they had was the greatest on the way, and I cried all the way. We been taken care all the time, especially at night. I did not didn’t know the situation of foetal medicine centre, we dare to sleep”. “Almost every month there were some- didn’t know how to find the doctor for treatment, whether things that worried me, such as when they should look the hospital would accept me, or whether there was a up, sit up, and stand up. If they developed later than chance for treatment. We were afraid that the foetuses children of the same age, I would be anxious. I would would die on the way”. take them to the hospital and give them various dietary supplements. I would try anything to promote their Unable to distinguish authenticity of information growth”. As the treatment for TTTS was centred in the foetal Raising children who were diagnosed with a developmen- medical centre, it was difficult for women who experi- tal disorder was even more troubling. The women blamed enced TTTS to obtain timely information and support themselves for bringing the children into this world and from the treatment hospital and first-diagnostic hospitals making them suffer. Daily rehabilitation therapies slowly during pregnancy and parenting. The Internet became wore away their patience, and the uncertainty about the the main method for them to obtain health information. outcome of their children’s rehabilitation made them feel However, information on the Internet was complicated, hopeless, but the love for children made them unable to and it was difficult for them to determine the authenti- give up easily. “It was all my fault, and I became more and city of the information without professional guidance. “I more suspicious of the original decision. If I had given up always search information from the Internet, but I did treatment at the beginning, the children would not suffer so not know whether I should trust the information I found. much pain. Sometimes it was very annoying, why the out- Sometimes there were two completely different advices, come was bad after I put in so much effort. But after all, and I did not know which one to trust. In order to avoid they are my own children, and I could not give up”. sadness, I would choose to trust the positive information”.

Long-term grief Too much worry Losing a foetus was excruciatingly painful for women ex- Women receiving treatment would pay particular atten- periencing TTTS. Whether they lost two foetuses after tion to foetal examination indicators and their own the operation or declined intervention, they would blame physiological changes after foetal surgery. For example, themselves for foetal death, and self-blame and guilt per- after obtaining colour doppler ultrasound results, they sisted for a long time after the pregnancy. “I often had would compare the blood flow and amniotic fluid values nightmares. I was sorry for my children and that I was with normal value themselves. After being discharged, unable to save them”. For women who lost one foetus, they would be extremely concerned about possible con- they would often think of the lost foetus in the stage of tractions. Any abnormality would increase their anxiety. raising the surviving child and loved the surviving child They knew that their worry was unnecessary and af- more passionately. “When I see the surviving child, I fected their lives, but no one told them what they should often think that I once had twins, but only one survived. I pay attention to. “After the operation, I was very worried felt regretful every time I thought about it. Now, I can about everything about the foetus. For example, I would only give more love to the living child”. be anxious when I had contractions, and when there were changes in foetal movements, but I felt that the doctor Main barriers did not care about these like I did. Was my worry un- Lack of information at the foetal medicine centre necessary? I had always been afraid that the foetuses The treatment of TTTS was centred in the foetal medi- would be affected”. The situation was the same after cine centre, and most patients required a referral. birth. Neonatal developmental status, lack of trace Ren et al. BMC Pregnancy and Childbirth (2021) 21:595 Page 6 of 8

elements, and changes in the number of bowel move- would really not worry about it...especially if I trusted the ments would all catch their attention. They were also professionals”. aware of that their anxiety might have affected their chil- dren, but due to the TTTS experience, they could not Psychological support help paying attention to these details. “I knew every de- TTTS women described that “On the treatment of dis- tail of the children’s development. At every development ease and neonatal feeding, there seemed be always vari- point I would see whether my children had reached the ous complications and problems need to be dealt with”. standard milestones. If they did not meet the standard, I From discovering the disease to parenting process, they would become anxious”. had to go through many checkpoints. They said that Doctors’ careful attention during treatment and success- The help needed ful treatment information obtained from talking with During pregnancy and parenting process, the biggest other patients can significantly reduce their psycho- stress source for women with TTTS experience was the logical pressure. “I hoped that the doctors and nurses children’s health. We cannot easily change the health could pay more attention to me, be willing to discuss the status of children, but there were things that could be children’s situation with me and answer the confusion in done more easily that were of great help to improve my heart. This would have made me feel more relieved”. their mental state throughout the whole process, such as “I especially hoped that I could discuss the children’s more optimized referral process, professional guidance situation with women who had TTTS experience, so that and psychological support. we would provide great psychological support to each other”. More optimized referral process Due to the lack of information on the disease, during Discussion this referral process, patients were full of fear of losing We found that the emotional reactions during pregnancy the foetuses. They hoped that the first-visit doctor could of women experiencing TTTS varied and their uncer- explain the basic facts of the disease, treatment status, tainty about the children’s health persisted from diagno- and possibility of foetal complications during the refer- sis to the postpartum parenting process. Due to the ral. Access to reliable information could reduce the influence of TTTS during pregnancy, regardless of women’s anxiety and prevent blind-searching for disease whether the children were hospitalized after birth, these information. In addition, the first-visit hospital should women faced great parenting pressure after birth. The establish a closer relationship with the foetal medicine lack of health information aggravated their uncertainty centre and inform patients of the treatment and referral about the children’s health, and small abnormalities process to help them find the treating doctor in time would cause them to be alert and anxious. For women and alleviate their worries about treatment timing and who lost their children, their thoughts, guilt, and sadness availability. “I hoped that the doctor would not just tell for the dead children persisted for a long time. me the name of the foetal medicine centre, they could tell Women who miscarried due to various reasons faced me how the disease would develop next. Would the foe- negative emotions such as post-traumatic stress and sad- tuses die on my way to the foetal medicine centre? Would ness for 1 year or more after delivery [17]. For women the foetal condition worsen quickly? His words deter- experiencing , in addition to the negative mined my mentality during the referral”. “I hoped the emotional reactions mentioned above, they worried first doctor could tell me what to do at the foetal medi- about the children’s health and faced high parenting cine centre to find the treating doctor in time, instead of pressure [18, 19]. Based on interview data, our study searching the treatment hospital and blindly relying on could infer that woman who encountered miscarriage or myself “. preterm birth because of TTTS would also had many negative emotions. During pregnancy, in addition to sur- Professional guidance gery, they also dealt with the fluctuation in foetal health, Patients would encounter significant confusion in the and their mood was calm only after a successful birth. process of postoperative pregnancy and later parenting. After childbirth, patients’ concerns about their children’s They hoped to contact the practitioners at the foetal health in the study often come from both TTTS itself medicine centre to obtain professional advice when en- and premature birth. Considering the complicated preg- countering problems. They said that any form of con- nancy and parenting experiences of such women, clini- tact, such as telephone, WeChat, or an Official Account, cians should pay attention to their psychological provided psychological support for them. “Every time I problems, especially women who lost foetuses because encountered a problem, I hoped that a professional could of TTTS or had poor fertility. Consequently, good peer tell me what to do. If they told me not to worry, then I support and contacting more TTTS women with good Ren et al. BMC Pregnancy and Childbirth (2021) 21:595 Page 7 of 8

pregnancy outcome maybe was a way to improve their Advantages and disadvantages psychological experiences. This study utilized a semi-structured interview to ex- In addition, optimizing the referral process and pro- plore the pregnancy and parenting experience of women viding them with healthcare guidance and reliable know- with TTTS. Our results could reflect their true feelings ledge would reduce their psychological pressure. from the diagnosis of the disease to the parenting Previous studies have shown that women who were process. However, given that patients resided in other transferred for treatment due to premature birth had un- regions, most interviews were conducted by telephone, certainty about the foetal outcome and difficulties in and we could not accurately identify the emotional state adapting to the new hospital environment [20]. Our of the interviewees. Furthermore, our study asked partic- study demonstrated that due to the lack of specialized ipants to recall their experiences and feelings over referral channels, the most significant difficulty experi- months or years, which could lead to recall bias. In enced by TTTS patients was that they were required to addition, due to the small number of participants experi- find information about the foetal medicine centre by encing miscarriage, the research results may not fully re- themselves. Due to the lack of health information from flect the pregnancy and postpartum life experience of the first-diagnosing hospital, they were full of fear of the these patients. Finally, some women may refuse to par- disease and uncertainty about treatment opportunities ticipate in our research because they were so sad and during the referral process. An efficient referral process unwilling to recall that painful experience. This may lead would ensure that patients received timely treatment our research results to be insufficiently comprehensive and get relief from anxiety during the waiting period and rich. But in order to reduce the influence of women [21, 22].Therefore, regional hospitals and foetal medicine who refuse to participate in the study on our results, we centres should establish closer relationships, establish have included more different populations as possible. direct medical channels to help patients who need intra- uterine treatment to find a treating doctor quickly. Be- Conclusion fore the referral, the first-diagnosing doctor should Women who experienced TTTS are a high-risk popula- inform the patients of the characteristics of TTTS and tion for mental distress. Factors contributing to this situ- possible disease-associated changes during the referral in ation include poor medical experience, unknown order to reduce their worry about foetal death. However, neonatal prognosis and the sadness for fetal loss. Im- for women who experienced TTTS, merely providing in- proving the referral process and establishing a follow-up formation support when the disease was diagnosed was system to provide such women with health information insufficient to meet the patients’ needs. Women had a maybe support them psychologically. Future studies can high demand for foetal health information during preg- explore follow-up strategies for such people and inter- nancy [23, 24]. For women who experience serious med- vention methods to improve their experience. ical events during pregnancy, continuous disease information and psychological support should be pro- Abbreviations vided to reduce the risk of subsequent mental distress TTTS: Twin-to-twin transfusion syndrome; MCDA: Monochorionic diamniotic [25, 26]. Our study observed that due to cross-regional treatment, women with TTTS had difficulty obtaining Supplementary Information postpartum healthcare information from foetal medical The online version contains supplementary material available at https://doi. centres, and it was difficult for local hospitals to provide org/10.1186/s12884-021-04057-0. precise advice. The lack of information caused them to be at a loss when they dealt with children’s health prob- Additional file 1. lems. In order to provide patients with more informa- tion, the foetal medicine centre should communicate Acknowledgements relevant disease information with the first-diagnosing We appreciated Dr. Chen Xi for Assisting in editing language the manuscript. hospital to improve the information education of the first-diagnosing hospital. Before patients are discharged Authors’ contributions from the foetal medicine centre, the hospital should pro- LJ R wrote the manuscript, all other authors (LJ R CL X, CC S, N W, YY and SW Y) participated in data collection and analysis. SW Y and LJ R designed vide sufficient disease information, so that the patient the experiment and were major contributors in writing the manuscript. The will be capable of coping with disease-associated author(s) read and approved the final manuscript. changes. In addition, the foetal medicine centre should establish a long-term follow-up system to provide a con- Funding venient way for women with TTTS experience to con- This work was supported by the National Key Research & Department Program of China, No. 2018YFC1002902. The fund mainly finances tact the foetal medicine centre to address their interviewees’ expense because of the research and the expense of polishing problems. and publishing article. Ren et al. 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Availability of data and materials 13. Kontopoulos E, Chmait RH, Quintero RA. Twin-to-twin transfusion syndrome: The datasets generated and/or analysed during the current study are not definition, staging, and ultrasound assessment. Twin Res Hum Genet. 2016; publicly available due further research remains ongoing, but are available 19(3):175–83. https://doi.org/10.1017/thg.2016.34. from the corresponding author on reasonable request. 14. Moser A, Korstjens I. Series: practical guidance to qualitative research. Part 3: sampling, data collection and analysis. Eur J Gen Pract. 2018;24(1):9–18. Declarations https://doi.org/10.1080/13814788.2017.1375091. 15. McGrath C, Palmgren P, Liljedahl M. Twelve tips for conducting qualitative – Ethics approval and consent to participate research interviews. Med Teach. 2019;41(9):1002 6. https://doi.org/10.1080/ Ethical approval was obtained from the ethics committee of Shengjing 0142159X.2018.1497149. 16. Korstjens I, Moser A. Series: practical guidance to qualitative research. Part 4: Hospital of China Medical University (2018PS20K) on 18 January 2018. The – Medical Administration Division of Shengjing Hospital of China Medical trustworthiness and publishing. Eur J Gen Pract. 2018;24(1):120 4. https:// doi.org/10.1080/13814788.2017.1375092. University provided the administrative permissions to access the raw data “ ” ’ from the hospital database after Ethical approval. The study was conducted 17. Côté-Arsenault D, Denney-Koelsch E. Have no regrets: Parents experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Soc Sci according to the principles of the Declaration of Helsinki. Written informed – consent was obtained from individual or guardian participants. Med. 2016;154:100 9. https://doi.org/10.1016/j.socscimed.2016.02.033. 18. Beck CT, Harrison L. Posttraumatic stress in mothers related to giving birth prematurely: a mixed research synthesis. J Am Psychiatr Nurses Assoc. 2017; Consent for publication 23(4):241–57. https://doi.org/10.1177/1078390317700979. Not applicable. 19. Yaari M, Treyvaud K, Lee KJ, Doyle LW, Anderson PJ. Preterm birth and maternal mental health: longitudinal trajectories and predictors. J Pediatr – Competing interests Psychol. 2019;44(6):736 47. https://doi.org/10.1093/jpepsy/jsz019. The authors declare that they have no competing interests. 20. Woodhart L, Goldstone J, Hartz D. The stories of women who are transferred due to threat of preterm birth. Women Birth. 2018;31(4):307–12. Received: 29 October 2020 Accepted: 17 August 2021 https://doi.org/10.1016/j.wombi.2017.10.015. 21. Neimanis I, Gaebel K, Dickson R, Levy R, Goebel C, Zizzo A, et al. Referral processes and wait times in primary care. Can Fam Physician. 2017;63(8): 619–24. References 22. Wong J, Tu K, Bernatsky S, et al. Quality and continuity of information 1. Marwan AI, Zaretsky M, Feltis B. Complex multigestational anomalies. Semin between primary care physicians and rheumatologists. BMC Rheumatol. Pediatr Surg. 2019;28(4):150825. https://doi.org/10.1053/j.sempedsurg.2019. 2019;3:1. 07.008. 23. Ghiasi A. Health information needs, sources of information, and barriers to 2. Robyr R, Lewi L, Salomon LJ, Yamamoto M, Bernard JP, Deprest J, et al. accessing health information among pregnant women: a systematic review Prevalence and management of late fetal complications following of research. J Matern Fetal Neonatal Med. 2021;34(8):1320–30. https://doi. successful selective laser coagulation of chorionic plate anastomoses in org/10.1080/14767058.2019.1634685. – twin-to-twin transfusion syndrome. Am J Obstet Gynecol. 2006;194(3):796 24. Wexler A, Davoudi A, Weissenbacher D, Choi R, O'Connor K, Cummings H, 803. https://doi.org/10.1016/j.ajog.2005.08.069. et al. Pregnancy and health in the age of the internet: a content analysis of 3. Korsakissok M, Groussolles M, Dicky O, Alberge C, Casper C, Azogui- online “birth club” forums. PLoS One. 2020;15(4):e0230947. https://doi.org/1 Assouline C. Mortality, morbidity and 2-years neurodevelopmental 0.1371/journal.pone.0230947. prognosis of twin to twin transfusion syndrome after fetoscopic laser 25. Furniss M, Conroy M, Filoche S, MacDonald EJ, Geller SE, Lawton B. therapy: a prospective, 58 patients cohort study. J Gynecol Obstet Hum Information, support, and follow-up offered to women who experienced – Reprod. 2018;47(10):555 60. https://doi.org/10.1016/j.jogoh.2018.04.003. severe maternal morbidity. Int J Gynaecol Obstet. 2018;141(3):384–8. https:// 4. Murgano D, Khalil A, Prefumo F, Mieghem TV, Rizzo G, Heyborne KD, et al. Outcome doi.org/10.1002/ijgo.12454. of twin-to-twin transfusion syndrome in monochorionic monoamniotic twin 26. Wall-Wieler E, Carmichael SL, Urquia ML, Liu C, Hjern A. Severe maternal pregnancy: systematic review and meta-analysis. Ultrasound Obstet Gynecol. 2020; morbidity and postpartum mental health-related outcomes in Sweden: a – 55(3):310 7. https://doi.org/10.1002/uog.21889. population-based matched-cohort study. Arch Womens Ment Health. 2019; 5. Spruijt MS, Lopriore E, Tan R, Slaghekke F, Klumper F, Middeldorp JM, et al. 22(4):519–26. https://doi.org/10.1007/s00737-018-0917-z. Long-term neurodevelopmental outcome in twin-to-twin transfusion syndrome: is there still room for improvement? J Clin Med. 2019;8(8):1226. 6. Edwards DM, Gray PH, Soong B, Chan FY, Cincotta R. Parenting stress and Publisher’sNote psychosocial health in mothers with twin-twin transfusion syndrome Springer Nature remains neutral with regard to jurisdictional claims in managed with laser surgery: a preliminary study. Twin Res Hum Genet. published maps and institutional affiliations. 2007;10(2):416–21. https://doi.org/10.1375/twin.10.2.416. 7. Schifsky K, Deavenport-Saman A, Mamey MR, et al. Risk factors for parenting stress in parents of children treated with laser surgery for twin-twin transfusion syndrome 2 years postpartum. Am J Perinatol. 2021;38(9):944-51. 8. Falletta L, Fischbein R, Bhamidipalli S, Nicholas L. Depression, anxiety, and mental health service experiences of women with a twin-twin transfusion syndrome pregnancy. Arch Womens Ment Health. 2018;21(1):75–83. https:// doi.org/10.1007/s00737-017-0758-1. 9. Vergote S, Lewi L, Gheysen W, De Catte L, Devlieger R, Deprest J. Subsequent fertility, pregnancy, and gynecologic outcomes after fetoscopic laser therapy for twin-twin transfusion syndrome compared with normal monochorionic twin gestations. Am J Obstet Gynecol. 2018;218(4):441–7. 10. Nelson PA. Getting under the skin: qualitative methods in dermatology research. Br J Dermatol. 2015;172(4):841–3. https://doi.org/10.1111/bjd.13720. 11. Pauling JD, Domsic RT, Saketkoo LA, Almeida C, Withey J, Jay H, et al. Multinational qualitative research study exploring the patient experience of Raynaud’s phenomenon in systemic sclerosis. Arthritis Care Res (Hoboken). 2018;70(9):1373–84. https://doi.org/10.1002/acr.23475. 12. Tong A, Winkelmayer W, Craig J. Qualitative research in CKD: an overview of methods and applications. Am J Kidney Dis. 2014;64(3):338–46. https://doi. org/10.1053/j.ajkd.2014.02.026.